Charlie Gard 12

[muckypup73]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Haven't commented for a while; to be honest I am struggling to keep up with the threads as RL is crazy.
I still have enormous sympathy for the parents. However arguing about the length of a scan seems ridiculous. Surely if he has the level of brain activity they claim then a longer scan is a better way of proving that? In one article earlier today I saw that the parents had released a photo supposedly showing Charlie intently watching a toy. I didn't see what they did. I saw a child whose eyes were briefly open with a toy in front of his face. It is telling that they are releasing still images rather than videos to prove their points. It is easier to make a snapshot look like something it is not.
To be honest I think it should be radio silence from the parents this week. If Connie wants to attend the meeting with the professionals there should be the same standard of behaviour from the family as the doctors. No photos or statements. Just facts laid before the judge at the appropriate time. Whatever CA think this case will be decided in chambers not on social media.
On a separate note, the vast majority of people I have spoken too think that Charlie should be allowed to slip away peacefully. I did have one run in with a friend of a friend who is a member CA. A few people have said they don't know how they would react in this situation.

Everyone whom I've spoken to about it agrees the principle that Charlie's rights are paramount and his parents wishes are secondary.

There has been however confusion about the proposed treatment - especially the 10% and 56% figures.

In this regard some people think it's in his best interests to receive treatment - they thought it was a 10% chance of a "cure". However when those figures are properly explained and they understand that (based on the information available- though new scans may change that) whilst treatment may provide improvement in a clinical sense it's not going provide improvement to Charlie's quality of life in a meaningful way.

This is where I'd agree that (with a few exceptions) the reporting in mainstream media has been very poor. It's largely failed to clarify the claims made and settled for sound bites from press releases without giving any context and/or explanation.

My team (medical researchers) are all in favour in letting Charlie pass with only the admin person disagreeing.

Outside of work everyone is agreement that it is sad and Charlie should be allowed to pass in peace away from public glare.

Everyone has great compassion for the parents with only one colleague having a slightly hard stance with Charlie's mum and dad but even then he feels nothing but sadness at the situation.

"I don't understand why they think they can override medical experts on something like the length of tests? Surely that is a clinical decision?"

I think the issue is that some things like EEG or MR scan need the parents permission. It is an intervention with Charlie after all, that has some potential to cause him discomfort or put him at risk? Doctors aren't just allowed to do whatever tests they want to do without either permission from the parents, or a ruling from the judge. I think the issue here was that perhaps Dr Hirano was okay with the parents suggestion of a 30 minute EEG, whereas the GOSH lot wanted a longer one. No agreement, hence they had to put it in front of the judge. From the other day (from Joshua Rozenbergs tweets):

Gollop QC for GOSH: any further imaging would not be for therapeutic purposes. But MRI scan would allow more measurement of brain than tape.
Judge: I can see that an MRI scan would be beneficial but I won't order it against the parents' wishes.
Gollop QC: same offer is open in respect of an EEG. We don't know whether Charlie is having seizures that can't be seen.
.....
Judge: I'm not likely to be persuaded by an expert who has never seen Charlie.
......
Judge: any further tests need to be carried out before Monday's expert meeting.

I think the judge wanted all the clinicians to be satisfied with the tests and feel they were in possession of all the possible evidence so that they can make their decision.

I'm quite upset by the idea that Charlie may be fitting, and since he has no muscle movement, it can't be seen. GOSH and a four-hour EEG should show what is going on without missing anything by being too short a time period. And let's remember that according to GOSH, he is either 'beyond experience', or the morphine means he isn't in pain.

A few people have discussed it with me in real life. A colleague for one. She is adamant today that he's going to the us. I try hard not to bite and ask her how/when etc. She seems to believe that he'll be ok if he's allowed into the us.

Another colleague mentioned the passport issue.

I mentioned to dh that the whole case is fascinating. But he thinks I should stop reading about it. I'm not a doctor can't help so why am I so "obsessed" with it. I don't think it's obsession more interest.

AcrossthePond55

But these are the same people who don't understand that the US taxes they pay goes to fix our roads and build our bridges. They only know they don't feel they should have to pay taxes or that they should be able to pick and choose what their tax money goes for.

So people like that don't really understand what equality of treatment and benefits like good roads for example are about?

Thanks for the info SomeDyke, that makes sense. Can anyone explain how an EEG is done? I mean, is it invasive?

The majority of my RL friends believe he should have the treatment, however I asked my ds who is 15 his opinion on it and he agreed with me, he felt that if he was in Charlie's place he would want me to let him pass, and if god forbid it ever came to it he wanted me to make sure I followed his wishes.

I am de-lurking just to ask a question of any hcps on here.

Even if CG was allowed to go to the US - is it even possible to transport him there? Would he survive a long journey? I though it was very difficult to transport a person on ventilation at all even if on a specialist medical flight? - let alone a long transatlantic flight, in a pressurised cabin for a baby with bloating/odema who requires many intensive care interventions.

I may be asking the obvious, but, apart from recent press speculation, does anyone (apart from those involved) know what conclusions the US doctor drew from his examination? Is he still in dispute with GOSH, wanting to try the treatment, or could he have decided they are right in considering the deterioration too advanced?

Can anyone explain how an EEG is done? I mean, is it invasive

It is a net of electrodes stuck to the head. DS had a few , both awake and sleep deprived between the age of 6 and 14 and they are not invasive at all. May be mildly uncomfortable but nothing more than that. The sleep deprived one we had to keep him awake all night, so he fell asleep when he got there. He was 14 at the time.

My experience is that an EEG is similar to an ECG except electrodes are attached to the head and not the chest.
It is not invasive and causes no discomfort.

It is possible Lunde but logistically has issues. Easiest way to think about it is you are not just transferring Charlie. you would need to transfer a whole ICU with him. In case anything goes wrong. You need to cover for any eventuality or deterioration in the patients condition. Because mid air you cant just go get a new drug or piece of equipment if you havent brought it with you in the first place.

I dont understand their objection to a longer EEG, I've had an overnight EEG, I slept with it on, it's not like a scan where he can't be touched etc during it. He's had short EEGs so it's not like they don't know what to expect, maybe it's visually disturbing for them to see him covered in more wires?

Kanga it's hard to tell from the photos if this is a fat baby who has no muscle - because it doesn't move - so is swollen because of excess fat or a swollen baby because of oedema. This could be because of liver or kidney or heart failure, all of which GOSH reports Charlie has.

Can anyone explain how an EEG is done? I mean, is it invasive

You have little pads glued to your head, they're attached to wires that are attached to a small recording box. You don't need to be in a special room for it, you can even have them in your own home. It doesn't hurt, I slept with them on.

Jingle I totally get what your dad said about fear of death. I used to work in a nursing home, and there was such a mix of reactions from relatives when someone passed away. One lovely lovely lady sat with her mum so calmly and quietly, just talking gently and sitting at her side for a few days until her mum slipped away. She knew her mum was ready to go, and it was a calm and peaceful death. Another set of relatives had their father/husband transferred from hospital after Doctors there said they were unable to treat him further. He'd got an ongoing degenerative disease and had reached a darned good age in spite of this. There was a huge sense of shock and anger from them, and they were so blinded by their rage that they made horrid unreasonable demands from both the nursing and care staff. It was truly awful and difficult to care for someone when their relatives were so hostile, and I can't even begin to imagine how they're managing at GOSH with this circus going on.

Lunde ICU patients can and do fly for transportation, but the final decision is with the airline. I cannot imagine an airline being willing to fly Charlie there.

I wonder if Prof Hirano will give evidence again by video-link in the hearing on Mon/Tues? If he and GOSH actually did agree in the end that the treatment was not in Charlie's best interests, having him say it semi-publicly is surely the only way that both social and mainstream media can be restrained from trying to tear GOSH a new one?

I may be asking the obvious, but, apart from recent press speculation, does anyone (apart from those involved) know what conclusions the US doctor drew from his examination? Is he still in dispute with GOSH

I don't think he was ever actually "in dispute" with GOSH
GOSH never disagreed with him that the treatment could have some effect
And he never disputed what GOSH said about CGs deterioration.

I can well believe they wouldn't let Charlie have the tests that GOSH wanted. They appear, imo, to be so desperate for them to be wrong and the other doctors to be right that they will do anything.

DS1 had an EEG when he was little. He had been having some absences and faint like episodes. I can't remember exactly how long it went on for but it was most of the afternoon.

Thanks, I thought it would be similar to an ECG which I've seen, but I just wondered if they were objecting to a longer one for Charlie's comfort which is why I checked. Knowing that it isn't invasive makes me think that they must be concerned about what the longer EEG will show. I've just been thinking about it from my point of view, if a doctor said your child needs this test I would bow to their expertise and knowledge (and I have a child with autism so am not adverse to fighting for things and questioning where necessary). But then I suppose this is just a further sign of how much the relationship and trust has broken down, I don't think that Connie will acccept anything that GOSH say. She was saying on fb last night that they aren't experts in his condition so maybe she genuinely doesn't reapect their clinical opinion at all.

Thanks for the new thread.

@RMC123 I agree with you -

If Connie wants to attend the meeting with the professionals there should be the same standard of behaviour from the family as the doctors. No photos or statements. Just facts laid before the judge at the appropriate time.